Patient Story-Matthew-Ehlers-Danlos Hypermobility Syndrome

Our adult son, Matthew, suffered greatly from the under-treatment of severe pain and almost died from it. Here is his story:

Matthew has several conditions that cause Intractable Pain. They are: the rare hereditary disease Ehlers-Danlos type 3-Hypermobility Syndrome affecting the connective tissues and many joints in his body, cervical spine compression, arthritis, post-traumatic brain injury-TBI concussion syndrome from past sports injuries, and intercostal neuralgia from a chest-wall resection surgery in 2010 to remove a benign tumor.

When he was growing up not much was known about hereditary connective tissue diseases such as Ehlers-Danlos. In retrospect, we recognize that many of his childhood health issues were related to this condition. His mother, aunt and maternal grandmother also had hypermobility, so we now know there is a family history for this condition. He dis-located his hip when he was 8 from jumping off a jungle gym. He had frequent knee pains and various “growing pains” through childhood, and often was in pain. We were told they were just normal “growing pains” by his pediatrician, as not much was know about EDS back then. As a teen was diagnosed with Slater’s disease of the knees. This hypermobility also helped him excel in sports, as is the case of many with Ehlers-Danlos and Marfan’s when they are young. The hypermobility enabled him to make extreme maneuvers while playing these sports that were out of the normal range.

Throughout his school years he was very active and like most young men, sustained multiple injuries through the years. Ice hockey and baseball were his favorite sports in his middle-school years. Little was known back then of the latent effect of ice hockey injuries (falls causing concussions and soft tissue injuries) have on someone with connective tissue diseases such as Ehlers-Danlos. He later developed a love of the great outdoors with camping, golfing, hiking and fly-fishing in the Colorado Rockies. He always loved to work hard, and he developed a successful career in finance after earning his BS Degree in Business and Finance through the Leeds School of Business at CU. In 2010 after the surgery his pain was steadily increasing and was diagnosed as intercostal neuralgia as an after effect of the surgery. Being formerly very athletic and an avid sportsman, he was eager to get back into top form after his surgery. He pain was increasing daily, and it was interfering with his work and other activities. He was becoming increasingly limited in what he could do. He became unable to work and he moved in with us permanently in 2013. Through the years after his surgery he tried many standard treatments including PT, trigger point injections, therapy, massage, CBT, acupuncture, rolfing, meditation, OTC medications, anti-inflammatory medications, low dose opioids, herbal remedies, etc. After a neurosurgeon determined he wasn’t a candidate for more surgery to correct the intercostal neuralgia, he was referred to a pain medicine anesthesiologist who did injections. One of the injections hit a nerve and that’s when his health took a fast nose-dive. Our formerly independent, strong, successful son was failing quickly and no one knew what to do to help in our home state. He had a hormone panel work-up in October 2013 in which his hormones were normal. The anesthesiologist who did the injection just told him he would “just have to learn to live with the pain.” That didn’t work so well and by January of 2014 he was in the middle of an Addisonian crisis with cortisol levels of 0.6 In two and a half months his pituitary gland and adrenals had shut down from the stress of shock- level pain. He was experiencing the start of an Addisonian crisis by the time we found Dr. Tennant. After very careful screening and medical records review, he thankfully agreed to take our son on as a patient. Matthew had tried and failed all standard treatments and this knowledgeable specialist saved his life. Dr. Tennant had not seen a patient with such a deteriorated adrenal crisis in many years.

We had to travel out of our home state to find a specialist who knows how to treat this kind of condition. Dr. Tennant tested him immediately for genetic malabsorption issues which he has, and that’s why standard medicines didn’t work for him. He requires non-standard medications and protocols that are individualized for his complicated medical conditions. The genetic malabsorption issue causes him to rapidly metabolize most medications including most analgesic medications. This requires higher non-standard doses of most medications to for them to work properly. Around 10 percent of the US population has this defect of Cytochrome P450 enzyme called ultra rapid metabolizing. We feel all doctors should know about this, as it does affect a significant portion of the population. With Dr. Tennant’s skilled, multi-faceted medical care, he is now doing well, making progress and getting back slowly but surely to some of the activities he previously enjoyed, despite his permanent health conditions caused by under-treated pain.

Needless to say, it was traumatic, horrifying and confusing not to be able to find a nearby physician who would help. To watch your adult son deteriorating before your eyes and not being able to find a doctor to help was terrifying and heart wrenching. You see, when someone is in pain they are often viewed through the lens of being an addict, and report of pain is often mistaken as a cry of “drug seeking”, but his hormonal system spoke the truth. We often wonder how many others have died this way from pain, after a doctor sends them on their way- “to just learn to live with the pain.”

As a country, we need to lift up our fellow citizens when they are at their most vulnerable, and not leave them to suffer needlessly. I believe we are still a country of great compassion and first rate scientific innovation. Pain that can be treated must be treated.

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